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KATHRYN H. KAVANAGH
Dr. Rain appeared, the bulging pockets on her white jacket straining its center button. She absentmindedly squelched buzzing apparatuses while looking around the room at the four of us and ascertaining our relationships with her patient. She then addressed herself to Joanne: "Well, the chances are about 10% of surviving a year without treatment." She paused. "And about 10% with treatment." She filled the room with jargon and checked to see if we followed; we did, except for Walt, Joanne's husband of 41 years-but he did not interrupt, and we three nurses did not slow down the talk on his behalf. Dr. Rain asked what questions we had. She was careful not to seem pushy about the experimental drug. It was all palliative now.
Joanne had had polymyositis for 20 years, but it was leukemia sounding the death knell. Both the stroke a few weeks earlier and the newly diagnosed leukemia were attributed by the clinicians to past treatments, and here they were pushing another drug. I learned later that Joanne had figured it out. She had written in her diary two years earlier: "I'm convinced it's due to 17 years chemo meds for poly and now the side effects are showing their ugly face" [Diary 2].
Dr. Rain covered everything she could imagine being of use and got from us every question we could produce. Joanne's decision to participate in the drug trial was not a difficult one when there wasn't going to be much time no matter what she did. The talk was of possibilities, not probabilities; the prize was quality of life, not quantity. More "older people" were needed to participate; participation was a contribution. Dr. Rain chuckled when we bristled at the "older people" language and acknowledged that we four sixtyish folks were on the young side of old.
Joanne communicated a need to commit herself to action, which was typical Joanne. Walt interjected something about Joanne's ashes going to a reef in the ocean if and when it came to that. It seemed both a surprising note and an indication that he too was processing all this at deeper levels. Joanne would go along with the new drug-"What else can I do?" Only later did I realize that she had broken the poststroke pattern of stopping after the second word. As soon as it was known that the drug trial would have another participant, the project director arrived with a flurry of forms for which she efficiently extracted shaky signatures. Then, as she attempted a hasty exit, Joanne stopped her. Dr. Rain had returned with more printouts. I was awed when Joanne, with no reference to her own plight but ensuring the attention of the supervising physician, stammered out a compliment about young Dr. Rain's caring presence.
Quilt-A Bedcover Made by Stitching through the Whole: Coming to the Inquiry
All interpretation is grounded in understanding. Heidegger, 1927/1962a, p. 195
Joanne was a quilter, and quilts are storied. Quilting, like hermeneutics, invites ongoing dialogue and makes possible the making, preserving, and sharing of meaning. Symbolism and openness abound in the gathering of hundreds of individual pieces in their path toward being "singular plural" (Nancy, 2000). Joanne's quilting lends a metaphor for her story through its creative organization, its enduring commitment, its colorful sense of play, and, in more philosophical terms, the situatedness of everyday activities with their embedded knowing, which involves the person-world that both shapes us and is shaped by us (Heidegger, 1927/1962a).
Challenges were nothing new to Joanne. I had been aware of her physical limitations for at least a decade. I even brought them up, only to have Joanne sidestep that conversation with "Oh, it's just a muscular thing" and a joke about aging. The boundary "draws us by its very withdrawing" (Diekelmann, 2005, p. 3). While a student in a nursing master's program, Joanne took my healthcare and culture courses and involved herself in diversity workshops I led. We also shared an interest in sewing and quilting; I teased her about being the only person I knew who owned two Berninas. The Bernina is a Swiss-made sewing machine, and I have owned two in the past 40 years (the first one still works); Berninas are made for serious sewers. Joanne and I occasionally went to quilt shows, but more often we met to discuss culture and nursing, particularly when she encountered people with backgrounds unfamiliar to her. Over the years I watched Joanne go from being ambulatory, albeit unable to "do steps," to needing arms on chairs to push herself up, and finally to an electric cart to get around. One night, outside a diner with a good ramp and wheelchair seating, she demonstrated with pride the lift in her van. Her friend Millie helped her figure out how to pull down the van door after getting the cart inside. I admired Joanne's independence, but I still knew nothing about polymyositis.
After Joanne's son Chris called to tell me she'd had a stroke I visited her whenever I could, following her from her local hospital to a rehabilitation center and then to the cancer unit of a major medical center when leukemia was diagnosed. Watching this highly verbal woman struggle for words, I saw suffering in her living with a chronic debilitating disease now compounded by a stroke and then superimposed with acutely devastating leukemia. What is more, Joanne was not the only one suffering; there was Walt too. Joanne said she would think about writing her story with me. A few weeks later, hospitalized yet again, she said, "Okay, do it." Language serves to substitute no-thing for a thing no longer there (Mairs, 1996), while in the coalescence of thrownness, understanding, and language lies the possibility of being fully human (Diekelmann, 2005, citing Heidegger). Joanne's words came in fragments, patched together like a few more pieces of a quilt. Aware of the impact of the stroke on her linguistic compensations for her physical problems, I thought aphasia had left the "let's" out when she said "do it." Now I am not so sure. How do we explore and understand such interrupted lives? Listening involved attending to both the dominant and the muted meanings. Heilbrun (1988) urges searching for the pain and stories that lie outside expectable discussion. Personal oral narratives in conversational contexts can be emancipating (Borland, 1991; Diekelmann, 1991), as were, according to her daughter-in-law Kristen, the stories that Joanne so loved hearing about her grandchildren.
The oldest of the arts (Cruikshank, 1992), storytelling is at the core of the search for meaning. Stories are never simple and always have multiple perspectives. Nor do they involve only individuals. For example, Joanne was to be in the hospital only four days for the experimental treatment. The first dose of the drug was inserted into Joanne's intravenous line. The combination of the extra fluids and who knows what else-the clear liquid looked so innocent up there in its little plastic bag-set Joanne's heart racing and her chest heaving. Walt ran for a nurse: "She's in trouble!" It was a small blip in medical history, but it was terrifying. Joanne thought her chest was going to explode, and Walt thought she was going to die. Later, when Walt spoke of going home exhausted after Joanne's first treatment, I asked whether he had finally got some rest and whether he had called their sons Skip and Chris-both adults, married, and fathers. The answer to both questions was no. Instead, he said, he "cried half the night." This was suffering cosuffered.
When Joanne agreed to our study, I, a medical anthropologist, started keeping field notes. Inquiry requires thick description, careful listening, and reading between the lines. Notes of my visits, for instance, went like this:
The medical center wanted Joanne treated like an out-patient and Joanne wanted to go home. I was to visit her today, but I got a message from Walt that her schedule had again been changed. Last week they ended up at the cancer unit four days, sometimes for hours at end, and sometimes with nothing getting done to or for Joanne when they were there. There seems to be little consideration of the effort involved in Walt's getting Joanne up and fed, bathed, clothed, and out to the van for the forty-minute trips into the city. Where would Joanne be without Walt? He says she is tired, she gets tired of sitting and waiting: "Everything hurts." Who gives the health system the authority to put a person on hold like that?
Their lives revolved around good days, bad days, but few predictable days-or even hours. Joanne and Walt lived in response to her physical condition, no longer merely around it. That meant Joanne could not attend the speech therapy and physical therapy sessions that symbolized for her the climb back to normalcy after the stroke. Joanne had little residual paralysis, but she was frustrated with her speech and cognitive impairment. Walt took her to work with a woman who had worked with other quilters who had had strokes-Joanne was excited. Her daughter-in-law Kathleen described it: "She was getting her energy back. It was as if she said, 'Okay, now I've had my cry and I'm moving on.'" But she had the chance to visit the sewing coach only once. Her condition and the "new drug" overwhelmed any quality of life.
Finding the Materials, Revealing the Pattern: The Inquiry
As if unfolding toward an ethos of the unknown, flexibility characterizes the crazy quilts of lives today. The paths of our existence are no longer limited by old rhythms of production and procreation but are instead indeterminate and full of myriad commitments and new beginnings. Continuity is the exception; adapting to discontinuity is an emerging problem of the era (Bateson, 1990). Composing a life involves continual reimagining of the future and reinterpretation of the past. While our lives are generally longer and more filled with possibilities than ever before, we are also more likely to engage in a day-to-day process of self-invention than in one of discovery. Then along comes a catastrophic diagnosis and prognosis. I wanted to know how one bears pain and uncertainty or the immediate reality of nausea and vomiting so violent that it seems it will not stop. Where is the meaning in such compromised existence? Hampl (1999) says pain has strong arms. As individuals and as a couple, Joanne and Walt were clearly in its grip.
How easy it is to wish for a trajectory of healing and improving health; how powerless one feels knowing that whatever will happen will happen. For most of us living everyday lives, the notion of being at the mercy of what our bodies can or cannot do is merely a mental exercise. As parts of a modern society we spend little time contemplating bodily functioning, let alone mortality. How often do we think about what tattered remnants of life constitute humanity when the whole is damaged? These questions are harder to know, perhaps, when our culture splatters mortality across the media with such indifference as to render it meaningless. Isak Dinesen wrote: "All suffering is bearable if it is seen as part of a story" (cited in Metzger, 1992, p. 47). I wrote in my notes: "What is the story here? Will it all be over before it begins?"
When Joanne agreed to work with me on her story, I told her we would make it her memoir, since that genre depicts the author's life vividly, affectively, and uniquely (Tedlock, 2000). Memoir creates a window into a life, acknowledging the importance of a historical perspective and highlighting a point of view (Frank, 2000). I pondered the task of cowriting a memoir with someone severely compromised in communication. Can a woman who can get out only every third word "write" a memoir? Not that Joanne ever particularly liked writing. Now she was very ill and could barely sign her name, and construction of the quilt squares she was working on when she had the stroke eluded her. But the stroke was only a new wrinkle in the old problem. Years earlier Joanne wrote: "Also went to speech evaluation. Didn't do well-there is a lot of facial and throat and tongue involvement" [Diary 1]. Now the brain conspired with the muscles against speech. During her hospitalizations she learned the risks and frustrations of the staff 's not knowing what she meant or wanted. Joanne clung tightly to Walt's presence; his interpretation of her speech and needs proved more valid and reliable than anyone else's. Did her discomfort distract her from concern about the future or exacerbate it? Cure was beyond our purview; how might we help her heal? Could I hear these things if Joanne communicated them to me? Joanne's memoir evolved into narrative ethnography, which combines life history and memoir.
In the midst of life we are in death. Book of Common Prayer, 1928, p. 332
The dwindling sands in Joanne's hourglass evoked for me the hungry ghosts of Buddhist iconography. Portrayed as beings with huge bellies that serve as storehouses for all they can possibly consume, their throats are as narrow as needles. Whatever they put in their mouths leaves them unsatisfied, so they perpetually devour anything they can (Levitt, 2003). I likened the task of representing Joanne in her story to the ritual feeding of the hungry ghosts; I wanted to understand everything I could of her experience. Despite their dissatisfied natures, hungry ghosts are fed the food of awakening directly from the Buddha's bowl, making new realizations possible. The narrow place, having an opportunity to be expressed, becomes a path of freedom. I wanted Joanne to share with me her stories about suffering. Joanne's work and her play were purposeful, and she kept at them, staving off suffering's victory when it would make accomplishment impossible (Cassell, 1991b). How was that? The storyteller picks the material and knows where she is and where she intends to go. It would be her voice, her characters, her worldview (See, 2002) while I wrote-but that was not to be. Yet suffering and transcendence are among the things most at stake in daily experience; they deserve to be the focus of study (Kleinman, 1995).
Walt called. "Joanne was pronounced at 8:15 this morning." After a harrowing month Joanne's friend Ski wrote in the notebook the family kept at Joanne's bedside: "She had Walt, Skip, and Chris at her side. It was [a] peaceful and beautiful death-just as she would have wanted it." Later a friend said, "She got tired. She just got too tired and could not do any more."
Notes from the funeral:
The church is a work in progress, the ceiling a patchwork of squares in transition or missing. Joanne would have appreciated that. She is there, her cremains under one of her most colorful quilts. A couple hundred people gathered to celebrate her existence and to grieve her departure. They look a homogeneous lot; Joanne would have voted for more diversity in the congregation. There are beautiful stories shared by those closest to Joanne. Stories about her more recent years-storms of ill health and her insistent striving for that rainbow, her spirit of joy and bursts of creativity, the flaming red hair proclaiming her philosophy of life, her stubbornness and culinary disasters. But most of the stories were about her caring, her being the consummate people person, her many years in nursing, and her desire for a legacy. This went beyond not speaking ill of the dead; people respected Joanne.
Ski, Joanne's longtime friend, coworker, and cosurvivor of various nursing education programs, told a story about Joanne tipping over an equipment tray to prevent some eager doctor from doing something completely misguided to his patient. Ski wound around her own neck a fuchsia feather boa she'd bought for Joanne; we all knew she would have loved its flagrant flamboyance. Joanne was known for her thoughtful gifts, carefully selected and often self-crafted to reflect highly individual interests and tastes. I thought about Joanne and Walt planning to buy their grandsons tickets for The Lion King at the Hippodrome in the spring, which Joanne would not see. There were stories of the polymyositis and of loving her through the hard times. One of her sons made reference to her love of human diversity and how she encouraged them to go and meet people unlike themselves-to meet them where they were and to "always remember to bring back a piece of fabric."
Excerpted from Meaning in Suffering by Nancy E. Johnston Alwilda Scholler-Jaquish Copyright © 2007 by The Board of Regents of the University of Wisconsin System. Excerpted by permission.
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